I was told me to get to the hospital at about 5 to prepare for my MRI at 5:25pm.

I immediately began to be concerned – I was having a high pain day, and one problem with an MRI, for those who are new to them – you have to keep completely still. If you move they will start the whole thing again. And anyone who knows me (or anyone with chronic pain!) will tell you – I can’t keep still. I personify a fidgeter.

I took every painkiller I could, and arrived at 5pm, parking in a blue badge space next door to the MRI centre, which was a great bonus as they were normally full. This meant I didn’t have to faff around getting my wheelchair out, as I was literally two steps away.

I was given paperwork to fill out, and immediately had to answer yes to a ‘red flag’ question – are you wearing any medicine patches? The lady informed me I would have to take it off. Oh. You mean the patch that was brand new on that morning, that’s meant to last me another four days and if I take it off means I will run out of patches four days early, causing mayhem to my delivery system, and will leave me without lovely morphine pumping through me at a time I need to lay down for half an hour and keep still? Apparently one person once had a reaction and it burnt her, so they now have to be taken off. I’m not moaning at this policy – I just wish they’d have mentioned it as I would have held off putting it on and wasting £70 worth of patch.

I’m then informed I’m in the mobile scanner, which is on the other side of the car park. At the look on my face, the receptionist kindly offers to call me a wheelchair, and I take her offer thankfully. At 5:30pm a lady arrives, who has a limp, and is told she needs to find me a wheelchair. She returns dragging a battered looking thing which she can’t get to move. She limps off to find another wheelchair in the hospital – and returns with a chair that needs to be pulled backwards. The rain is now pouring down, and I look longingly at the people going into the next room for the MRI as I’m pulled out the room backwards, by a lady who looks like she needs a wheelchair too, into the wet, cold car park.

We don’t make it very far – she pulls me straight into the tunnel that joins the two parts of the hospital up, and then says she is going back for an umbrella, and leaves me. A grumpy looking security person comes along and closes all the doors around me, before I can protest. Limping lady arrives back and isn’t happy that she now has to try and get a wheelchair through a couple of sets of closed doors. Her umbrella blows inside out, and she gives up. The receptionist appears and takes over the pulling duty, and they take me to the other side of the hospital. Lucky for them – I can walk a few steps, because the mobile unit they have sent me too isn’t accessible. I’m told to stand on a lift in the pouring rain – which isn’t big enough for a wheelchair, and they send me up. I get even more soaked and cold while she shouts through to the other side to try and explain how they open the door to someone who can’t find the button.

I’m shaking by the time I get seated next to the person taking images, and can see the outline of a pelvis on the screen. They are all sitting in coats, and look cold and bored. I’m nervous – I’m soggy and about to go into a big electrical machine, but the lady assures me it won’t electrocute me! I’d spent the afternoon putting together a ‘relaxing music for an MRI’ CD to try and drown out the noise, so I get it out, but they tell me the CD player is broken. I’m struggling to breathe by now as panic sets in, so I puff on my inhaler before they take my bag away to lock up, and I take my patches off. I’m not scared about the MRI itself – just worried about them having to restart because I move. The other lady finishes and is getting dressed. I’m aware of this as the porter walked in on her doing so without knocking.

I’m ushered in next, although I’m told I can’t take my stick in and will have to use the bed to lean on – which is too low to be possible. It’s small and cramped. The lady with me doesn’t really speak English very well, and waves at the bed, and then raises it until it’s much too high for me to get on. She then sighs and says I was meant to sit on it first, but I hadn’t caught on what the random wave towards it meant. I have to take off anything that includes metal – but luckily I dressed to avoid zippers, etc. She tells me to lay down and put the ear plugs in. Every time I put them in, she then asks me a question – so I have to take them out, only for her to be asking if I’m ready.

She sends me through into the narrow tunnel, before she stops and says ‘Are you arms touching the sides? They are. She seems concerned, which makes me concerned – but she says, ‘Oh, I’m sure it will be fine. Just hit the emergency buzzer if you feel anything.’ She then leaves, and I’m wondering if I feel what?

A voice comes over the intercom to say they are starting, and I cannot move. I’m completely tense – they haven’t given me more than a couple of seconds to try and relax out and get into a comfortable position, and it’s off before I can do so. I then have to maintain the completely uncomfortable position – my muscles trembling and spasming, in my fear of moving and making them restart, therefore prolonging it.

I’m also worried about my arms. The time before I had an MRI I just tried to daydream, but this time my focus is on where my arms are touching the top. As the tube begins to warm naturally – as anyone would in a narrow tube, I worry about her definition of warm. Does she mean any kind of warmth, or if I actually feel it start to burn? I get hotter and hotter in there, probably as I panic.

I’m so glad when it’s finally over. They drag me back to the MRI centre in the backwards wheelchair, and leave me to get back to the car. Unfortunately I’m left feeling so dizzy, sick and in agony, I shuffle back to the car and almost collapse in. I’m left in excruciating pain for the night, even after replacing the patch.

So, that was my experience of my second MRI. I just hope it’s all worth it!

The first part of the story can be found here. From 2008 onwards my mobility vastly decreased. I swiftly went from sticks, to wheelchairs, to sometimes a few steps being too much. The chiropractor I was seeing at the time advised she thought my facet discs may be getting worse, but wasn’t entirely sure.

By this point I had a diagnosis of Ehlers-Danlos Syndrome, was aware one of the issues is that it causes joints to degenerate a lot quicker than they should as they are hypermobile and moving out of place all the time, which then in turn causes them damage. So it’s sensible to keep an eye on it, as you could technically end up crumbling away!

Last year I brought up this issue to my GP. While I understood and generally accepted the condition, and the general levels of constant pain, I was worried about what was going on in my lower back which has been the worst pain I have for some time. She agreed with me it was a valid concern, but said she did not have the authority to send me for an MRI unless it was for a surgical reason. I pointed out that I was unsure if it was surgical until it was scanned, but as she could find no symptoms relating to a disc pressing on a nerve – which is not my worry anyway, there was nothing she could do.

Instead she wrote to my two EDS specialists. One my specialists I really like – he listens in appointments, and makes lots of referrals. The other one comes across as slightly dismissive, and mostly spend her time trying to get me to lessen my painkillers – which wasn’t going to happen, after finding my current regime the best I’ve had so far. The problem with the first specialist is that he doesn’t seem to respond to GP letters. I realise he’s busy, and should have retired years ago – but local doctors just don’t have the skills and knowledge to treat EDS most of the year, and we shouldn’t have to wait for a check up just to get a simple question answered.

The second specialist did come back, however – to say she felt the answer to my issue was exercise. I have to say my letter back her from my GP and I wasn’t particularly polite. Oh, exercise! Silly us! I’ve done all the bloody stretches and exercises they have given me, and it’s ten years later and my lower back is simply getting worse. This is not an issue to simply dismiss as ‘have an exercise sheet.’ I have to say all my trust in her immediately evaporated at that response.

My GP then tried again to a local Pain Consultant. I have to say I’ve never liked this pain consultant. I saw him before I had a diagnosis, and he seemed to immediately take against me because I’d already tried the suggestions he normally makes to patients (acupuncture and a TENS machine… Yep, that’s it.) On my first appointment I asked him if he thought it may be Fibromyalgia, and he responded, “You can call it that if you like, but I don’t as it’s too American.” On my second appointment he said I was on too many painkillers, and that I needed to come off one of the painkillers. On my third appointment he said I wasn’t on enough painkillers, and upped my morphine dose.

But I still wasn’t expecting the response I got back from him that stated in black and white that to give me tests/injections into my spine would be “medicalising her condition, when she should be seeking psychiatric help” or something to that effect. He also seemed to have forgotten I have a diagnosis Ehlers-Danlos Syndrome, and stated my condition was Chronic Pain Syndrome instead.

Luckily, my follow-up with the first specialist was due a few months later – and he agreed with me I should have an MRI, as we don’t exactly know what the issue is – whether it’s something that’s got worse, or something new. The bad news is that they are transferring existing EDS patients from my preferred hospital of UCL London, to Stanmore – therefore losing him as my specialist, and making the other one my primary.

Two weeks ago my GP phoned to say now that my consultant has agreed in regards to the MRI, I can now go on the waiting list! I wasn’t sure how long they were taking, and hadn’t heard anything when couple of weeks ago I received a phone call from the MRI department asking if I was aware I had an appointment in a couple of hours, as I had yet to confirm it. Um, no, I certainly did not. I thanked her profusely for calling me, if she hadn’t I would have gone down as a Do Not Attend – and gone to the back of the waiting list at best, discharged at worst.